With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.
Australia is one of the most successful multi-cultural countries in the world, resulting from continuous immigration for the last 70 years or so. Australia is home for people from almost 200 countries with more than one in five speaking a language other than English at home. Some people arrive in Australia seeking protection from conflict in their own country. They may seek protection as a refugee and in the meantime live in the community while awaiting the outcome of their asylum request. Drawing on a story of one asylum seeker, this paper describes some of the key considerations required in caring for an asylum seeker who is facing the end of their life, making recommendations for addressing their often-complex care needs.
Background: Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations.
Methods: This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings.
Results: Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (= 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services.
Conclusions: Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.
BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries.
AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients.
DESIGN: Qualitative thematic analysis of semi-structured interviews.
PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed.
RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses.
CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.
Aims: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications.
Design: Systematic literature review.
Data Sources: The following search engines were searched from 2008 - 2018: Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health, MEDLINE, Embase, ProQuest, Scopus, Psycinfo, and Web of Science. Extensive reference and citation checking were also conducted.
Review Methods: Systematic review followed PRISMA guidelines with prepared PROSPERO registered protocol #CRD42019129200. English language qualitative, quantitative, or mixed methods studies were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT).
Results: Eighteen studies (reported in 20 articles) met the final inclusion criteria. Most focused on challenges to care provision. Thematic analysis following methods proposed by Braun and Clarke was undertaken. Five themes were identified: (a) divergence of beliefs and expectations; (b) communication; (c) navigating healthcare systems; (d) burdens and coping strategies; and (e) training and knowledge. A compassionate, collaborative approach with mutual respect crossed themes and was linked to high-quality care.
Conclusion: Forced migrant families have multiple needs including physical and emotional support and help in navigating complex systems. Professional interpreters can ease communication barriers when resourced appropriately. Individualized care is crucial to addressing the intricate mosaic of culture such families present. A cultural sensitivity/insensitivity framework is presented that may help guide future interactions and priorities for those working in children's palliative care.
Impact: This systematic review explored the international experiences of palliative care for forced migrant families. The findings highlight the plight of families who experience multiple traumas and increased levels of grief and loss through their migration experiences and when caring for a child with a life-limiting condition. This research has potential to have an impact on professionals working with culturally diverse families in all palliative care settings.
OBJECTIVES: To examine the factors of advance directive (AD) completion among older Chinese Americans.
DESIGN: Cross-sectional survey.
SETTING AND PARTICIPANTS: Data came from 435 Chinese Americans aged 55 years and older living in 2 metropolitan areas through self-administered questionnaires and research assistant-administered interviews in 2018. Participants' average age was 75 years (standard deviation = 9.4).
METHODS: Logistic regression was used to examine factors associated with AD completion.
RESULTS: Approximately 14% of participants completed an AD. Older age [odds ratio (OR) 1.07, 95% confidence interval (CI) 1.02-1.12], higher level of acculturation (OR 2.15, 95% CI 1.39-3.33), higher expectation for intergenerational support (OR 1.52, 95% CI 1.02-2.27), and having US citizenship (OR 3.02, 95% CI 1.26-7.23) were positively associated with AD completion. Physical and mental health needs were not significantly associated with AD completion.
CONCLUSIONS AND IMPLICATIONS: This study is among the first focusing on AD completion among Chinese Americans, one of the fastest-growing older minority populations in the United States. Findings highlight the influence of socioeconomic and cultural factors on AD completion and illustrate the importance of developing culturally sensitive interventions to promote end-of-life care decision making among older Chinese Americans.
OBJECTIVES: This study explored associations between birth region, socio-demographic predictors and advance care planning (ACP) uptake.
METHODS: A prospective, multi-center, cross-sectional audit study of 100 sites across eight Australian jurisdictions. ACP documentation was audited in the health records of people aged 65 years or older accessing general practice (GP), hospital and long-term care facility (LTCF) settings. Advance care directives (ACD) completed by the person ('person completed ACDs') and ACP documents completed by a health professional or other person ('health professional or someone else ACP') were counted. Hierarchical multi-level logistic regression assessed associations with birth region.
RESULTS: From 4187 audited records, 30.0% (1152/3839) were born outside Australia. 'Person completed ACDs' were less common among those born outside Australia (21.9% vs 28.9%, X2 (1, N = 3840) = 20.3, p & 0.001), while 'health professional or someone else ACP' was more common among those born outside Australia (46.4% vs 34.8%, X2 (1, N = 3840) = 45.5, p & 0.001). Strongest associations were found for those born in Southern Europe: 'person completed ACD' (OR = 0.56, 95% CI = 0.36-0.88), and 'health professional or someone else ACP' (OR = 1.41, 95% CI = 1.01-1.98). English-language proficiency and increased age significantly predicted both ACP outcomes.
DISCUSSION: Region of birth is associated with the rate and type of ACP uptake for some older Australians. Approaches to ACP should facilitate access to interpreters and be sensitive to diverse preferences for individual and family involvement in ACP.
Aims: This review aims to explore the extant literature on the current utilization of ACP in Kisin order to obtain a comprehensive understanding of their health disparities and to determine evidence-based best practices to integrate culturally-competent ACP for EOL care of KIs.
Design: A systematic integrative review of the literature Data Sources: Four electronic databases including PubMed, the Cumulative Index of Nursing and Allied Health Literature, the Cochrane Library, and Embase.
Method: The detailed search strategy for databases implicated a combination of MeSHkeywords and associated terms, which can be found in Table A.
Results: Three themes emerged in relation to fundamental components in the integration of culturally-competent ACP for EOL of KIs: (1) cultural characteristics of KIs; (2) disparities in ethnic-oriented ACP and EOL care resources in KIs; and (3) KIs’ perspectives on ACP.
Conclusion: The findings of this review indicate that culturally-competent ACP resources for KIsare presently quite insufficient. It is determined that much future research is needed on how culturally-competent ACP can best augment the quality of EOL care for KIs, and on how specific interventions can effectively implement ACP in community settings. Impact: Such ongoing research dedicated to the development of feasible culturally competent practice guidelines is anticipated to markedly reduce health disparities and promote ACP in KIs. The recommendations in this review may support Korean primary HCPs, Korean health care center administrators, Korean health maintenance organizations (HMOs), Korean advance care nurse practitioners in hospice and palliative care, and nurse researchers in their work.
Much of the scholarly literature sees death as a taboo topic for Chinese. To test this assumption, this study held seven focus groups in the Greater Toronto Area in 2017. It found that the majority of the older Chinese immigrant participants talked about death freely using either the word death or a euphemism. They talked about various issues including medical treatment and end-of-life care, medical assistance in dying, death preparation, and so on. A small number did not talk about death, but it seemed their reluctance was related to anxiety or discomfort or simply reflected a choice of words. The study concludes death as taboo could be a myth, at least for older Chinese immigrants.
CONTEXT: Many in the rapidly-growing Chinese-American population are non-English-speaking and medically-underserved, and few engage in advance care planning (ACP). Evaluating culturally-determined factors that may inhibit ACP can inform programs designed to increase ACP engagement.
OBJECTIVES: To describe attitudes and beliefs concerning ACP in older, non-English speaking Chinese-Americans in a medically-underserved urban region.
METHODS: Patients were consecutively recruited from a primary care practice in New York City to participate in a cross-sectional survey. Attitudes and beliefs were measured using an ACP Survey tool and the validated Traditional Chinese Death Beliefs measure. Exploratory analyses evaluated associations between these two measures, and between each measure and sociodemographics, primary dialect, acculturation (using The Suinn-Lew Asian Self Identity Acculturation Scale), and health status (using the Short Form-8 Health Survey).
RESULTS: Patients (n=179) were 68.2 years on average; 55.9% were women, and 81.0% were non-English speaking (42.8% Cantonese, 15.2% Mandarin, 19.3% Toisanese, 19.3% Fuzhounese). Most had low acculturation (mean=1.7/5.0), and highly-rated physical and mental health (means=70.1/100 and 81.5/100). Few patients (15.1%) had an advance directive and 56.8% were unfamiliar with any type; 74.4% were willing to complete one in the future. Thirty-two percent "agreed" that "talking about death in the presence of a dying person would accelerate death". The analyses revealed no significant associations.
CONCLUSION: These Chinese-American older adults had low acculturation and very limited knowledge of, or engagement in, ACP. Factors that may predict culturally-determined attitudes and beliefs about ACP were not identified. Further research can inform efforts to improve ACP engagement in this population.
BACKGROUND: Immigrants to North America receive more interventions at end of life potentially due to knowledge gaps. The primary objective of this study was to measure and describe levels of perceived knowledge about palliative care among immigrants to the United States (US) compared to those born in the US. Our secondary objective was to identify trusted sources for seeking information about palliative care among immigrants and compare these trusted sources with those born in the US. We hypothesized that immigrants would have less knowledge of palliative care than those born in US and would trust different sources for information about palliative care.
METHODS: We analyzed data from the nationally representative 2018 Health Information National Trends Survey (HINTS 5, cycle 2). Questionnaires were administered via mail between January and May 2018 to a population-based sample of adults. The primary outcome of interest was assessed using the item "How would you describe your level of knowledge about palliative care?" The secondary outcome of interest was determined using the item "Imagine you had a strong need to get information about palliative care, which of the following would you most trust as a source of information about palliative care?" Descriptive statistics were calculated, and bivariate analyses run between the outcomes of interest and sociodemographic characteristics (age, sex, education, race/ethnicity, nativity, fluency with English). Multivariable logistic regressions were conducted to assess the role of nativity, controlling for relevant sociodemographic variables. Jackknife weighting was used to generate population-level estimates.
RESULTS: About 70% of those born in the US and 77% of immigrants (weighted) responded that they had "never heard of palliative care." Trusted sources of palliative care were very similar between the groups (all P>0.05). Both groups' preferred trusted source of palliative care knowledge was "health care provider," with over 80% of respondents in each group selecting this option. Printed materials and social media were the least popular trusted sources among both groups. After adjusting for relevant sociodemographic characteristics, we found no association between poor knowledge of palliative care and nativity (P=0.22). Female respondents had 2.5-fold increased odds of reporting low levels of perceived knowledge of palliative care (OR =2.58, 95% CI, 1.76-3.78; P<0.001). Education was an important predictor of perceived knowledge of palliative care; as education level increased, so did perceived knowledge of palliative care (P<0.001).
CONCLUSIONS: Perceived knowledge of palliative care is poor generally, regardless of birthplace. Trusted sources for palliative care are similar between immigrants and those born in the US. Education is important and is a strong predictor of perceived knowledge of palliative care. Women perceive they have lower levels of knowledge of palliative care (PC) than men. Differences in end of life care between immigrants and non-immigrants cannot be explained by knowledge differences.
BACKGROUND: The provision of appropriate end of life care for patients who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare, can be difficult and stressful for the nurse. To date, research has focused predominately on nurses' experiences of end of life care for the Muslim patient who is an immigrant in another country.
OBJECTIVES: To critically review the literature related to the lived experiences of non-Muslim expatriate nurses providing end of life care for Muslim patients in their home country.
DESIGN: Integrative Literature Review DATA SOURCES: Comprehensive online search of Library Databases: Ovid, CINAHL, EBSCOHost; MEDLINE; Science Citation Index Expanded; PubMED; Web of Science; PROQUEST, and Scopus.
REVIEW METHODS: An integrative review of literature published within the dates January 2000 - July 2017. Included articles were published in the English language, peer reviewed/refereed, and focused on nurses' experiences. Both qualitative and mixed method studies describing the experience of non-Muslim nurses providing nursing care to Muslim patients in a country that was predominately Muslim were included.
RESULTS: Initially 74 articles were found of which nine met the inclusion criteria. Research has been conducted predominantly within the Kingdom of Saudi Arabia, with one article from Bahrain and one other jointly from Kingdom of Saudi Arabia and the United Arab Emirates. The research indicates that expatriate nurses view themselves as powerless patient advocates, are hindered by the nurse-patient-family-physician quadriad structure, language and differing beliefs about communicating death, and negotiating culturally safe care is emotionally challenging.
CONCLUSION: This review highlights that the stressors associated with misalignment of expectations cause emotional and physical distress for the nurses. When nurses were focused on clinical care, they were unable to accommodate cultural practices that were important to the patient and family, contributing to increasing stress. Researchers have sought to capture this distress and make some sense of its impact. How nurses can provide culturally safe care, in countries with cultural practices quite different from their own, bears further investigation.
Context: Migrant populations across Europe are aging and will increasingly need end-of-life care.
Objective: To gain insight into end-of-life care and decision-making for patients with a non-western migration background and assess differences compared to patients with a Dutch or western migration background.
Methods: A mortality follow-back study using a stratified sample of death certificates of persons who died between August and December 2015, obtained from the central death registry of Statistics Netherlands. Questionnaires were sent to the attending physician (n = 9,351; response 78%). Patients aged = 18 who died a non-sudden death were included in this study (n = 5,327).
Results: Patients with a non-western migration background are more likely than patients with a Dutch or western migration background to be admitted to and die in hospital (51,6% vs. 33,9% [OR 1.74 CI95% 1.26 – 2.41]; 39,1% vs. 20,1% [OR 1.96 CI95% 1.39 – 2.78]); less likely to receive morphine or morphine-like medication and continuous deep sedation (72,8% vs. 80,1% [OR 0.62 CI95% 0.43 – 0.89]; 16,8% vs. 25,2% [OR 0.52 CI95% 0.34 – 0.80]); and more likely to receive end-of-life care that, according to physicians, is directed at curation for too long (6,8% vs. 1,7% [OR 3.61 CI95% 1.83 – 7.12]). End-of-life decisions are made less frequently for patients with a non-western migration background (71,6% vs. 79,2% [OR 0.64 CI95% 0.45 – 0.91]). Characteristics of decision-making are similar.
Conclusion: End-of-life care for patients with a non-western migration background focuses more, or longer on maximum, curative treatment and end-of-life decisions are made less often.
Patients with limited English proficiency (LEP) experience disparities in end-of-life decision making and advance care planning. Our objective was to conduct a systematic review to assess the literature about interventions addressing these issues. Our search strategy was built around end-of-life (EOL), LEP, ACP, and goals of care. The databases included Ovid MEDLINE(R), and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily from 1946 to November 9, 2018, Ovid EMBASE. Eight studies from the US and Australia were included (seven studies in Spanish and one study in Greek and Italian). Interventions used trained personnel, video images, web-based programs, and written materials. Interventions were associated with increased advance directive completion and decreased preferences for some life-prolonging treatments. Interventions were deemed to be feasible and acceptable. Few interventions exist to improve end-of-life care for patients with LEP. Data are limited regarding intervention effectiveness.
The first time I met Emma, she showed me a video of her piano performance downtown; it was named “Brightness after the Dark.”
Emma was a pianist. She and her husband, Yusuf, left their country at the age of 21, when the war started. As a migrant, she took pride in sharing her gift with the world, now America. She trained long hours to perfect her sonatas.
Then her life took an unexpected turn. A stage III lung cancer was diagnosed when she was 37. By then, she and Yusuf had 4 children, ages 5 to 15. A single lobectomy and course of chemotherapy followed. She went back to her piano full time, trying to put her cancer journey behind her.
On Emma’s 10th cancer anniversary, a computed tomography scan of her chest showed a new spot in the opposite lung. Her time as a cancer survivor had come to an abrupt end. A biopsy showed that a second lung cancer, of a different cell type, was present. Staging scans and lymph node sampling suggested that her new tumor was operable. And that is when I met her.
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Background: Latino patients with advanced cancer need culturally responsive, effective psychotherapeutic interventions that can assist them in coping with their diagnosis and improve spiritual and existential well-being and psychological adjustment.
Objective: This study describes the cultural and linguistic adaptation of individual meaning-centered psychotherapy for Latinos with advanced cancer.
Design: A mixed-methods, concurrent integrative approach was used for this study, using the ecological validity and cultural adaptation process models as frameworks for cultural adaptation.
Setting/Subjects and Measurements: Quantitative and qualitative data were collected through (1) a survey of mental health professionals (n = 70) who offer services to Latino cancer patients; (2) a questionnaire for Latino patients with advanced cancer (n = 54), measuring relevant intervention concepts; and (3) in-depth interviews with 24 Latino patients.
Results: Quantitative findings showed that most of the goals and concepts were highly acceptable for patients and providers. The qualitative findings supported adaptations to include using more simple definitions; changing phrases that are challenging to translate and comprehend; using words that are common to all Latino cultures, providing more than one option if needed; simplifying the questions/reflections, as needed; changing the metaphors to be culturally congruent; and modifying content to make it responsive to Latino cultural values and norms.
Conclusions: Findings demonstrate the need for adaptation to achieve the aims of the intervention, accounting for both linguistic and cultural considerations, emphasizing issues related to literacy, cultural and linguistic diversity, cultural values, and culturally congruent content. The mixed-methods approach is described to provide recommendations for clinicians, researchers, and program developers.
CONTEXT: Research has shown that utilizing medical interpreters in language discordant patient-provider encounters improves outcomes. There is limited research evaluating the views of medical interpreters on best interpreter practices when they are utilized to break bad news or participate in end of life conversations.
OBJECTIVES: To (1) develop insights from medical interpreters about their role when interpreting discussions regarding end of life issues, (2) identify practices interpreters perceive as helping to improve or hinder patient-provider communication, and (3) obtain suggestions on how to improve communication during end of life conversations with Spanish and Chinese speaking patients.
METHODS: Semi-structured interviews were conducted with Spanish or Chinese medical interpreters. Participants were recruited until thematic saturation was reached. Twelve interviews were conducted, audio tape-recorded, transcribed, and analyzed using standard qualitative methods.
RESULTS: Six major themes were identified: (1) medical interpreters' perceived comfort level during end of life interpretation, (2) perception of interpreter role, (3) communication practices perceived as barriers to effective communication, (4) communication practices felt to facilitate effective communication, (5) concrete recommendations how to best utilize medical interpreters, and (6) training received/perceived training needs.
CONCLUSION: Medical interpreters provide literal interpretation of the spoken word. Due to cultural nuances in Chinese and Spanish speaking patients/family members during end of life conversations, medical interpreters can translate the meaning of the message within a specific cultural context. Conducting pre-meetings and debriefings after the encounter are potentially important strategies to maximize communication during end of life conversations.
BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus.
METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument.
RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument.
CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.
Dans cet article, l’auteur présente les bases théoriques et techniques du dispositif de médiation transculturelle mis à la disposition des équipes de soins palliatifs. Accompagner une famille dans cette épreuve est un défi pour toutes les équipes soignantes. Ce défi peut se révéler plus complexe encore lorsque soignants et parents ne partagent pas les mêmes références culturelles. Dans des situations d’impasse thérapeutique, la prise en compte du fait culturel – considéré non plus comme un frein, mais au contraire comme un catalyseur formidablement actif – peut non seulement enrichir l’interprétation médicale, mais aussi rendre possible une réelle rencontre entre le patient et son médecin.
The intensive care unit (ICU) is no stranger to death, but one patient encounter struck a particularly poignant chord within me during my second year of residency. Mrs Y, a native of China, was barely in her 40s when she was diagnosed with metastatic adenocarcinoma.
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